Living with Pema Chödrön

A quick update, before I head home and go to sleep. Nancy is sleeping.

I have some positive news. I talked to the UCSF bone marrow transplant coordinator today, and learned a lot about the process. The hospital is actively putting the search into motion, and also testing her siblings. They are also contacting our insurance to get authorized to do the expen$ive testing to see if Nancy's brother or sister will be a good donor.

Nancy is a very good candidate for her transplant. They expect to find a donor, if not her brother or sister, some good matches from the larger community of 250,000+ registered donors.

The transplant process itself should also have a high probability of success, partially because we should find a good match. She is caucasian, and most registered donors are caucasian. Patients from other ethnic groups, with a smaller pool of donors, have a much more difficult time.

On other fronts, we removed her hair tonight, and I am now married to a buddhist monk. At least, that is what I imagine. She looks good, and is gifted with a nice head shape. Also, after many years of shaving my head, I'm very happy to say that I did not cut her at all during the process.

Time to head home, walk the dog, and sleep....

-tdc

Weekend update, with Nancy and Tom

Hi, everyone.

Thought I'd beat Saturday Night Live...Nancy's doing well, we're mostly just waiting.

Her marrow biopsy results from Wednesday were good, no evident leukemia cells, although they do show up in some other tests. The hospital is contacting her brother and sister to do the testing to see if they can be marrow donors. She's on three antibiotics to compensate for her compromised immune system, and is now doing fine, with no fevers or side effects. She looks great -- if you didn't know she's dealing with cancer, you wouldn't be able to tell. Except for the IV cart that accompanies her everywhere, of course. We call it Wally.

She is starting to lose her hair, however. We're planning on when to clip her hair short, how much, etc. She also doesn't have much of an appetite, so I've been bringing whatever she wants to eat. I get to have many of the hospital dinners, which are ok, but not haute cuisine.

She wants to thank everyone for your calls, visits, cards, gifts, prayers, positive thoughts. "I'm very grateful. I know that I'm being held in a circle of love." She also says, "I just want to get out of here, I miss my cats, my life. I'm trying to embrace this one as graciously as I can. My sacred teaching has been to be more receptive, to receive your support."

love,

tom and nancy

Become a bone marrow donor

Friends,

I've set up an easy online link if you are willing to become a bone marrow donor. Nancy's life will ultimately depend on getting a compatible marrow donation. Please -- seriously consider this.

The process is easy, but requires your willingness to donate your marrow. You also have to be in good health, and 18-60 years of age. It is unlikely that you will ever become a donor (I've been in the system 20 years without getting matched). However, if you are matched, you may very well save someone's life.

Getting typed is as simple as filling out some forms on the web, getting a kit by mail, swabbing your cheek, and mailing the kit back. Marrow donation itself -- if you ever get matched -- is not a big surgical procedure, nor is it especially uncomfortable. There are details on the web site.

Here is what to do to become a donor:

        • Click the link http://join.bethematch.org/nancyjones

        • Fill out the online consent

        • Make a voluntary donation (optional, it costs $55 to do the lab testing).

        • A swab kit will be mailed to you within about 48 hours.

        • Swab your inner cheek with 4 swabs (instructions are in the package).

        • Mail the swabs back in the envelope provided.

        • You will be mailed a confirmation letter in the mail in a couple of months.

        • That’s it!

If you would like to donate to the National Marrow Donor Program, the non-profit that is doing this, you can go to http://www.bethematchfoundation.org/goto/nancyjones to make a donation. I’ve set up a page for her there.

Please feel free to forward this email on to others. Folks can contact me directly if they have questions.

Warm regards,

-tdc

The road just got rougher (and a call to action)

Friends,

Nancy cytogenetic typing results came in today, and they are not what we were hoping for. She does not have the 'inversion 16' type, she has what are called 'complex cytogenetics'. The FAB classification for her leukemia would be M0 or M1.

In short, she will need a bone marrow transplant sometime in the future, and we're on a more challenging road to recovery.

For the next couple of weeks, things will depend on her biopsy scheduled for tomorrow. She may be free of leukemia cells, in which case she'll get another week of treatment to rebuild her immune system, and will be getting outpatient treatment while we look for a bone marrow donor. She may still have leukemia cells, which would require more chemotherapy. Either way, we're going to be dealing with this for months or years.

Nancy says "Nothing in my life has ever been easy. I felt really bad for my doctor today, he's usually pretty up and cheerful, and I could tell the minute he walked in, I was not going to get good news."

We’re both upset, of course. And disappointed. And determined.

One way you can help is to get typed and registered as a bone marrow donor. The only thing that can ultimately save Nancy’s life is a bone marrow donation. The process is pretty simple -- it just takes a blood sample -- and in the unlikely event you ever get selected as a donor, donation is not a big procedure. I’ve been a marrow donor for 20 years, and never been called. The odds of matching are only 1 in 20,000-to-50,000.

Spread the word. All the info is at http://www.marrow.org/JOIN/index.html?src=tabjoin. Do it now. I’ll have more information tomorrow.

Warm regards,

-tdc

The end of week two

Friends,

It's hard to believe that it's been just two weeks since I brought Nancy into the Novato ER, pale, weak, and running a fever. We're a world better off now, but in some ways we've come full circle. Nancy has been weak and running a fever today.

Her fever broke a couple of hours ago, and she is sleeping soundly, so I think we're over the hump. It turns out that it's not uncommon for someone like Nancy, with basically no immune system at the moment, to get an infection from her body's own bacteria. She's on two antibiotics via IV (vancomycin and merrem), and was running 100-103° this afternoon and earlier this evening. But she's back down to 99 at the moment, and I'm relieved.

I'm spending the night, thanks to some help from our friend Margo, who is taking care of our dog this weekend. The hospital has it's usual sounds, someone's IV machine is chiming in the distance, nurses walking by, the occasional cart rolling down the hall. Nancy room has been darkened all evening, and I've been catching up on computer stuff, taking care of financial matters, while she sleeps. Thank god for laptops with illuminated keyboards, and wireless. I'm feeling solid and patient and even fairly well rested.

Still no word on the cytogenetic testing. It will probably be Monday when we find out. Nancy has another bone marrow biopsy scheduled for Wednesday, so we will find out in five or six days if the first round of chemo eliminated the leukemia cells from her marrow.

Thank you for the lovely gifts and cards. We have books on tape, magazines, some new altar objects. Whoever brought the Chai Rooibos tea was thoughtful.

with love,

-tdc

Cautiously optimistic

I have an update on the cytogenetics. We don't have the full analysis back yet, but there is a test indication that Nancy's leukemia is an "inversion 16" genetic error, which would be 'acute myelomonocytic leukemia', or "M4" in the older FAB leukemia classification system.

This is one of the best possibilities, and has a good chance of successful treatment, if that is in fact what she has. Keep the faith. I'll let you know as soon as I know more.

With love,

-tdc

Waiting...with many hats

Nancy's first round of chemotherapy ended today, and now we have a 1-week break (in the hospital) before the next stage of treatment. There's little other medical news, except that a spinal tap shows her spinal fluid clear of leukemia cells. We're still waiting for the cytogenetic analysis of her bone marrow, to tell us which kind of AML she has.

Her in-laws have been visiting her father this week, as her stepmother Vangie is in a skilled nursing facility. Janet & her brothers sent a lovely gift: Nancy now has a serious assortment of head gear, scarves, kerchiefs, turbans, plus a couple of Vangie's "garden club" hats. Our friend Michelle came over and cut her hair yesterday, so she now has a short (dare I say pixie-tomboy?) haircut something like I've seen on her from pictures taken in her 20's. She's going to have a different look in a week, and I have to admit, part of me is anticipating the transformation. Who am I really married to, anyway?

She's very solid and present, a bit tired, not eating as much. Come to think of it, that describes both of us, although I still tend to be a little gloomier than she is. Some of that is just the fatigue, my restless mind keeping me from sleeping a full night. Perhaps I've found a bullet to bite in my music collection. I'm listening to the Allman Brothers as I pay bills and write this... "I need your love so bad".

-tdc

Blood donations welcome :-)

Hi!

Nancy’s still doing fine, looks great, in good spirits, but is a bit fatigued at the end of the day. I’m also tired (short of sleep!), but getting things handled, going to work each day and coming to visit each evening. She’s most of the way through her initial chemotherapy, which will end tomorrow or Thursday. Then she’ll have a week of waiting, recovering (and losing her hair), before they take another bone marrow biopsy and figure out the second stage of treatment. We’ll get the genetic analysis of her leukemia late this week.

Some of you have asked about donating blood for Nancy, and that would be great. She’s gotten a couple more units, and will be getting more within a few days. The easiest way is to donate here at UCSF, and the blood center web site is http://www.ucsfhealth.org/clinics/blood_center/index.html. I’m scheduled to donate platelets later this week, but she’s also getting whole blood. Her blood type is A+, so she can receive donations of any blood type. You will want to do a “Directed Donation” to Nancy Jones, 11 Long Hospital. She’ll be here another 3 weeks, and it would be most helpful to get the donations within the next week, the sooner the better.

We’re optimistic. As Nancy says, when she got her diagnosis, she was relieved, because it could have been something worse. At least this is treatable, although the outcome is uncertain.

With love,

-tdc

A night in the hospital

Hi, friends.

I have little actual news to share, except that we are having a good weekend together. We are still waiting for the cytogenetic analysis of Nancy's cancer. As her sister Janet says, "pray for M3".

It is the fourth day she is getting chemo, and it's starting to have an impact. This is infusion chemo, cytarabine and daunorubicin, so she has an IV cart, her ever-present companion, that we've named "Wally". She is doing well, and looks fine, but is feeling a bit more tired and subdued. We had a series of a half-dozen visitors yesterday, plus more than a dozen phone calls, so it was all a bit fatiguing.

Our friend Marianne is taking care of our german shepherd, so I’m happy to say that I get to spend the entire weekend here. I slept in her room last night, where there is a sleeper chair that’s reasonably comfortable, and we also spent half the night cuddled together on her bed. Nancy said this morning that it’s the best night of sleep she’s gotten here so far.

The hospital is quiet at night, but the room is full of subtle noises. The building ventilation sighs, and we can hear some roof machinery outside. Wally makes a soft chittering noise, and glows with changing LED displays, so I never forget that we are dancing Shiva destruction in her system, the leukemic cells dying off. By the way, a good article on AML is at http://www.uptodate.com/patients/content/topic.do?topicKey=~ttBBP_d..IIUjL

This morning the world is gone outside, as the hospital floats in a sea of dense fog. Nancy’s looking forward to the NFL playoff games on TV and seeing her nephew and sister-in-law today.

-tdc

Diagnosis (from Nancy)

Hi, everyone.

Well, I met with my team of doctors at the end of the day, and received the diagnosis I expected. They presented my treatment plan, which instills confidence and hope. I begin chemo tomorrow, and it's a cycle of 7 days on one drug, followed by 3 days on another. As Tom said, once the more detailed results are in from my bone marrow, they'll know more about my treatment.

My cancer is treatable, and can go into remission, but there are no guarantees. My biggest enemy at this point is infection. I feel like I have a really good team behind me, fighting for me, and because of that I feel blessed, and really hopeful.

I woke up this morning and meditated for 20 minutes. I just asked the universe for resource and nourishment, and I thank you for all of your prayers. I really feel them, and I think that your wishes and support really have an effect. I'm humbled, and appreciate all the love that's come my way.

I'm planning my hair ceremony with my beautician :-)

love,

Nancy

Diagnosis

Hi everyone.

We finally got the news we didn't want this evening. Nancy has leukemia. Specifically, it's acute myeloid leukemia. Further testing on her biopsy over the next few days will tell us more. It's treatable, and the recovery rate will depend on the specific genetic signature of her cancer. Some kinds have very high recovery rates, and some don't.

So she is starting chemotherapy tomorrow, and we have about 4 weeks of that ahead. Her doctor said that it's a good sign that she survived such a severe anemia without having heart problems or other issues, she's strong and in good shape going into the stress of chemotherapy. It's not so good that she got so seriously anemic...we don't know how long she's been ill, but it had to be at least two months.

Nancy is still up for visitors and phone calls. There is a new twist however, she has a skin rash that indicates a sensitivity to chicken pox. It seems odd, but if you've had chicken pox, you can visit. If you have NOT had chicken pox, and have not been vaccinated for chicken pox, then you can't come and visit.

Also, we're moving to a new room, 1163, still on the 11th floor of Long Hospital. It should have better cell phone reception, which will be welcome.

Those of you who know Nancy well also know she has a weakness for cheeseburgers and fries with tons of ketchup. She put in the request, so I walked down to Carl and Cole to BurgerMeister, and got cheeseburgers for dinner. It was darn good.

-tdc

First update, no news yet

Thanks for all your wishes, prayers, kindness. Nancy is sleeping as I'm doing logistics stuff on my computer in her darkened hospital room. I just had to do the first update on 1/11/11, even though we have no test results yet. I hope to have some news tomorrow.

She's bounced back quickly with all the transfusions, and is getting some strength back after spending most of the last month in bed. Today was a battery of tests, including a bone marrow biopsy from her hip, EKG, ultrasound, eye exam.

The hospital and staff are amazing. Great nurses, people that are bright, well-trained, motivated, "present" in a buddhist sort of way. The doctors work as a team, so it's like support from Apollo Mission Control. The first doc we talked to is about 30, an MD, Ph.D, does research 50% of the time, clinical 50%, asked great questions, listened carefully, examined compassionately, gave us lots of time to ask questions. She has a private room that's quite nice, and the food is even good.

-tdc